Endometriosis is an excruciatingly painful, debilitating condition that affects approximately 1 in 10 Canadian women, and one hundred and ninety million women across the globe.
The disease has a big impact on women’s daily lives, affecting not just physical health but also work, finances, mental well-being, social life, and intimate relationships.
Despite its prevalence and the impact on patients’ lives, diagnosis and treatment in Canada remain frustratingly slow and inadequate: On average, Canadian women wait for seven plus years before receiving a diagnosis, and up to 21 months for surgical care. Many women have their pain dismissed or misdiagnosed, leading to unnecessary suffering, long-term, potentially life-threatening complications and earnings losses.
This article explores the current landscape of endometriosis care in Canada, the reasons behind the delays, available treatment options, financial burdens on patients, and alternative care solutions, including medical tourism.
What is Endometriosis?
Endometriosis occurs when cells from the endometrium, the tissue that lines the uterus and sheds during menstruation, implant and grow in areas outside the uterus, such as the ovaries, bladder, fallopian tubes, and pelvic lining.
These travelling endometrial tissues behave similarly to the uterine lining, thickening and shedding during each menstrual cycle. However, since they are outside the uterus, the tissue and blood have nowhere to exit the body, leading to inflammation, scar tissue, and pain.
Endometriosis can worsen if left untreated, potentially leading to chronic pain, fatigue, infertility, and complications like adhesions or damage to surrounding organs such as the lungs.
For more details on endometriosis, what this video from The Mayo Clinic:
Symptoms and Impact
The most common symptom of endometriosis is pain. It can occur during a woman’s period, outside of her period, or during sex. Women with endometriosis may also struggle with problems like painful urination, painful bowel movements, and infertility.
Additionally, debilitating fatigue affects over half of the people who suffer from endometriosis. It’s one of the most draining and stressful symptoms, often linked to sleep problems, depression, pain, and work stress, or a mixture of all 4.
The combination of medical expenses, lost productivity, and career setbacks creates a heavy financial burden for women with endometriosis during their prime working years. Studies show that endometriosis can impact the ability to work by up to 40%, leading to lost wages and career stagnation. Some women are forced to reduce their work hours or leave their jobs entirely, which not only impacts personal income but also reduces retirement savings and long-term financial security.
Unsurprisingly, endometriosis can profoundly impact a woman’s sex life and cause relationship issues.
A leading cause of infertility amongst women in Canada, it’s estimated that 25% to 50% of infertile women are also diagnosed with endometriosis, and conversely, 30% to 50% of women with endometriosis experience infertility.
Left unmanaged, invasive endometriosis can result in life-threatening complications including bowel obstruction and organ death.
Diagnosing Endometriosis
Countless tales abound about women having their pain dismissed, making time to treatment that much longer. According to Canada’s Endometriosis Network, research from other countries shows that only 25% of family doctors can identify common symptoms of endometriosis.
Many other factors contribute to the average delay in diagnosis:
- People with endometriosis may not want to speak up about period pain because of taboos and stigma about menstruation.
- Women are not necessarily taught what a normal period should be or feel like, and what the common symptoms of endometriosis are.
- Women’s reproductive-related pain is often normalized. As a result, pain and symptoms may be dismissed by family, friends, and healthcare providers.
- Awareness among family doctors and nurse practitioners is low.
- Current diagnostics make it difficult to confirm endometriosis.
In Canada, endometriosis diagnosis typically involves a discussion about your symptoms and medical history, a gynecological exam (if you’re comfortable with an internal exam), imaging such as ultrasound or MRI, and potentially a laparoscopy, which is a minimally invasive surgical procedure to visualize and finally confirm the condition.
Treatment Options
Once the diagnosis of endometriosis is confirmed, most women will employ a variety of treatments and medications to manage endometriosis.
Since standard treatments don’t always provide complete relief – or do only temporarily, many women explore an integrated approach to manage their endometriosis symptoms:
Physiotherapy focused on the pelvic region can help reduce muscle tension and improve mobility, which may ease pelvic pain.
Acupuncture is also popular, with some studies suggesting it can reduce pain by improving blood flow and calming the nervous system.
Dietary changes—like reducing inflammatory foods (such as sugar and processed carbs) and increasing anti-inflammatory options (like leafy greens, fish, and nuts)—have been reported to help some women feel better.
Pelvic floor therapy involves internal and external treatments aimed at relaxing and strengthening the muscles in the pelvic area, which can reduce pain and improve bladder and bowel function.
Surgical Interventions – For women with severe or persistent symptoms, surgery is sometimes recommended:
- Laparoscopy is a minimally invasive procedure where a surgeon removes or burns off endometrial lesions. While this “gold standard” treatment can provide relief, symptoms often recur within five years in up to 50% of cases.
- Hysterectomy (removal of the uterus) is sometimes considered for severe cases, especially when other treatments have failed. However, it’s not a guaranteed cure since endometrial-like tissue can grow outside the uterus.
Pain Management
Pain is one of the most challenging symptoms of endometriosis. First-line treatments typically include nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, which help reduce inflammation and ease menstrual cramps.
Hormonal therapies are also common; birth control pills can regulate the menstrual cycle and reduce the growth of endometrial tissue, while GnRH (gonadotropin-releasing hormone) agonists can put the body into temporary menopause to limit estrogen production (which fuels endometriosis). Other forms of combined hormonal birth control, like vaginal rings or patches, can also be used.
Progestin-only pills (such as norethindrone or dienogest), injectable progestins, or progestin-releasing intrauterine devices (IUD’s) can be used as an alternative or supplement to combined hormonal therapy. Progestins suppress the growth of endometrial tissue and can help reduce pain and bleeding.
However, these treatments mainly help manage symptoms—they don’t cure the disease. Side effects like mood changes, bone density loss, and menopausal symptoms can also make them difficult to tolerate long-term.
Watch the informative virtual panel discussion with NYU Langone endometriosis experts below as they share their multidisciplinary perspectives on how individuals can manage endometriosis pain, and how integrative health, physical therapy, and surgery work together to maximize pain relief.
Leading Canadian Gynecologists and Clinics for Endometriosis
Every endometriosis specialist is a gynecologist, but not every gynecologist is an endometriosis specialist so choose carefully when engaging with specialists for endometriosis care. Here are some notable clinics across Canada:
McMaster University Medical Centre & Hamilton Health Sciences: Dr. Mathew Leonardi, an advanced gynecologic surgeon and ultrasound specialist, practices at McMaster University Medical Centre’s 2F endometriosis clinic. His clinic is one of the few in the country that integrates advanced pelvic ultrasound as part of the clinical visit.
The Ottawa Hospital: Dr. Innie Chen, a specialist in complex gynecologic conditions and pelvic pain, works at the Shirley E. Greenberg Women’s Health Centre, offering advanced laparoscopic surgery options.
Sunnybrook Hospital: Dr. Leslie Po specializes in fibroids, endometriosis, and advanced laparoscopic surgery, with research interests in quality improvement and patient safety.
Sinai Health: The Gynaecology program at Mount Sinai Hospital focuses on advanced care for complex gynecological conditions, including advanced endometriosis, with surgeons renowned as global leaders in minimally invasive surgery.
IWK Health Centre, Halifax: The Endometriosis & Chronic Pelvic Pain Program (E&CPP) is the first interdisciplinary clinic dedicated to the treatment and management of endometriosis and chronic pelvic pain in the Atlantic Provinces.
BC Women’s Hospital: Dr. Catherine Allaire is the Medical Director of the BC Women’s Centre for Pelvic Pain and Endometriosis, with other Gynecologists Caroline Lee and Tinya Lin also working there.
University of Toronto: The Toronto MIGS Centre at Sunnybrook Health Sciences Centre has 8 MIGS staff that are University of Toronto academic faculty and offer diverse minimally invasive surgical procedures for endometriosis and pelvic floor reconstruction.
Queen’s University, Kingston: Dr. Olga Bougie, Dr. Anita Agrawal, and Dr. Nicholas Leyland are part of the Department of Obstetrics and Gynaecology.
Click here to find a surgeon experienced in Endometrial care from the Endometriosis Network Canada.
Cost of Endometriosis Care
In Canada, consultations with gynecologists and surgeons, as well as surgical procedures like laparoscopy and hysterectomy, are typically covered under the public healthcare system.
However, accessing care can be a long and frustrating process. Wait times to see a specialist can stretch from months to over a year, depending on the province and availability of gynecologists trained in endometriosis.
Basic diagnostic tests (like ultrasounds) and some imaging may be covered, however more specialized procedures (like MRIs) might require additional approval or have long wait times.
Even though public healthcare covers some treatments, many essential therapies and medications come with significant out-of-pocket costs:
- Prescription medications – While basic medications like NSAIDs are affordable, hormonal treatments such as birth control pills, GnRH agonists, and progesterone-based therapies are not always fully covered by provincial drug plans. Women without private insurance may face monthly medication costs that add up quickly over time.
- Alternative therapies – Treatments like physiotherapy, acupuncture, and pelvic floor therapy are not covered by most provincial health plans, despite evidence that they can improve endometriosis symptoms. A single session can range from $75 to $150, and ongoing treatment may require weekly or bi-weekly sessions, leading to substantial costs over time.
A way to beat the long wait times is to get care privately in a clinic in Canada or travel abroad. Initial consultations at a private clinic in Canada can cost $300 to $500, and surgical procedures can run into the thousands. For example, private laparoscopy costs can range from a few thousand dollars to upwards of $15,000 depending on the complexity of the surgery and follow-up care.
If you have private insurance, check with your provider beforehand to see if any out-of-pocket costs are covered.
Medical Tourism: Do Canadian Women Have Better Options Abroad?
While Canada offers highly reputable clinics for endometriosis treatment, some patients consider seeking care abroad due to factors like wait times or access to specialized procedures. Here are some Internationally Recognized Endometriosis Treatment Centers:
Bucharest Endometriosis Center: Bucharest Endometriosis Center is an integrated facility for diagnosis and surgical treatment for endometriosis and adenomyosis. Founded in 2018 by Doctor Gabriel Mitroi, the Center offers quality care and an individualized medical approach.
Seoul National University Hospital (SNUH): SNUH is renowned for its comprehensive women’s health services, including advanced endometriosis treatments. They offer minimally invasive laparoscopic surgeries and have a dedicated team for endometriosis care.
University Hospital RWTH Aachen: Home to leading gynecologist Prof. Ivo Meinhold-Heerlein, known for his expertise in endometriosis and gynecologic oncology. They provide advanced surgical treatments and participate in cutting-edge research on endometriosis.
Hospital Clínic de Barcelona: Features specialists like Dr. Francisco Carmona Herrera, internationally recognized for his work in endometriosis. The clinic offers both medical and surgical treatments, including minimally invasive procedures.
Northwestern Memorial Hospital, Chicago USA: Led by Dr. Serdar Bulun, a prominent figure in endometriosis research and treatment. The clinic provides comprehensive care, from medical management to advanced surgical options.
Considerations for Medical Tourism:
- Cost: Private laparoscopic surgeries abroad can range anywhere from $10,000 to $40,000 CAD, depending on the complexity of your medical needs. While some countries offer more affordable options, it’s essential to factor in travel and accommodation expenses.
- Follow-up Care: Post-operative care is crucial. Receiving treatment abroad may pose challenges in continuity of care once back in Canada. Additionally, surgery is only 50% effective, with symptoms often returning.
- Risks: Potential complications can arise, necessitating additional treatment upon return. It’s vital to have a plan for managing such situations.
Support Groups for People Living with Endometriosis
Twice a month, The Endometriosis Network Canada hosts Canada-wide virtual support groups via Zoom for people living with endometriosis or suspected endometriosis. Click here to learn more.
Femade.ca is an Ontario-based women’s health and wellness organization that offers a monthly support group for Ontarians suffering from pelvic pain and/or endometriosis.
If you suffer from endometriosis, it is critical to refute any care provider that minimizes your symptoms or tells you that your pain is in your head. If you are not getting the treatment you need, seek a second (or third!) opinion from a gynecologist that specializes in endometriosis.
Additionally, carve out time for self-care and support from family, friends and others suffering from endometriosis. If you have the time and energy, consider advocating for improvements in endometriosis care in Canada.
Finally, if you have someone in your life that is suffering from endometriosis, believe that their pain is real. Support and if need be, advocate for them on their quest to get treatment.
They have a long and complicated journey ahead of them. Let them know they are believed.
~ Read more from The Health Insider ~
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- Ignored Risk: Bone Scans For People Over 50A fall, a fracture, and an unexpected diagnosis: learn how osteoporosis can strike silently and how to protect your bones.
The information provided on TheHealthInsider.ca is for educational purposes only and does not substitute for professional medical advice. TheHealthInsider.ca advises consulting a medical professional or healthcare provider when seeking medical advice, diagnoses, or treatment.
